Four-year follow up of fatigue in a geographically-defined primary biliary cirrhosis patient cohort

David E J Jones ^1*, Neeraj Bhala ¹, Jennifer A Burt ¹, Jennifer Goldblatt ¹, Martin Prince ¹ and Julia L Newton ¹

¹ University of Newcastle upon Tyne, United Kingdom

^* To whom correspondence should be addressed. E-mail: d.e.j.jones{at}ncl.ac.uk.

Accepted 12 October 2005

Abstract

Background & Aims: Fatigue is the commonest symptom described by patients in most populations with the autoimmune liver disease primary biliary cirrhosis (PBC), and appears to be unrelated to liver disease severity. At present it is unclear how the fatigue experienced by patients (only characterised to date in cross-sectional studies) evolves over time. In this study we set out to address how fatigue had changed over 4 years of follow-up in a geographically defined cohort of PBC patient who participated in an earlier cross- sectional study of fatigue impact.

Methods: Participants in the original 2000 study who were still alive in 2004 were asked to complete the same fatigue assessment tool (FIS). In those who had died between 2000 and 2004 medical notes, death certificates and primary care records were reviewed.

Results: 108 of the original cohort of 136 patients were alive at the time of the follow-up study, 99 of whom (92%) participated in the follow-up study. With the exception of 4 patients who underwent transplantation between 2000 and 2004, all of whom showed significant improvement in fatigue severity as assessed by FIS, fatigue severity was unchanged over 4 years of follow-up. Amongst the 28 patients who died during the follow-up period survival was significantly lower in the patients who were fatigued at the 2000 baseline (FIS above the median for the whole PBC population (40/160)) (Log-Rank Test p=0.006 v non-fatigued at baseline patients). Increased fatigue severity was independently associated with decreased survival on multi-variate analysis. Fatigued PBC subjects were significantly more likely to have suffered a cardiac death than non-fatigued patients.

Conclusions: The fatigue phenotype appears to be highly stable in PBC. The presence of fatigue in PBC is independently associated with significantly increased risk of death in general and cardiac death in particular. The factors underpinning fatigue in PBC, and the mechanisms whereby fatigue is associated with increased mortality, warrant further study.

Keywords: epidemiology, fatigue, health related quality of life, liver cirrhosis

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